Unlocking potential of kids with Down syndrome

Thursday

Mar 3, 2011 at 12:01 AM

May 30, 1986, turned into a warm, beautifully sunny day. But inside the delivery room at St. Luke's Hospital in New Bedford, Sandra Kinney, then 23, felt a distinct chill. She had just given birth by caesarean section to her first child, a son, and she sensed something was wrong.

MARSHA ZEITZ

May 30, 1986, turned into a warm, beautifully sunny day. But inside the delivery room at St. Luke's Hospital in New Bedford, Sandra Kinney, then 23, felt a distinct chill. She had just given birth by caesarean section to her first child, a son, and she sensed something was wrong.

"It was very quiet in the delivery room after Craig was born," she says. "I kept asking if something was wrong, but no one would say anything. They just took my son out of the room. Later, in the recovery room, a nurse came up to me and told me that my son was medically healthy. That still left a lot of questions. It wasn't until the next day that my pediatrician came in to my hospital room to tell me that there was a good possibility that my son had Down syndrome."

Down syndrome occurs when an individual has three, rather than two, copies of chromosome 21, according to the National Down Syndrome Society (NDSS). It is the most common of chromosomal conditions, occurring in one of every 691 babies born in the United States.

People with Down syndrome have cognitive delays and are at increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions.

Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives, reports the NDSS. In fact, life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 in 1983 to 60 today.

Getting services as soon as possible is key to unlocking the potential of children with Down syndrome. But it often takes time for the family to adjust and reorder its goals and priorities.

"The first reaction that my husband and I had was fear," says Kinney, 46, of Marion. "What would our future hold? How could this happen? How would this affect our other children? We did know that Craig was a healthy baby. He had no medical complications, but we also knew that he would always have special needs. Our extended families immediately stepped in to support us, and we eventually realized that it wasn't so terrible, that we would be OK with this."

The first thing Kinney did when she got home from the hospital was to find out as much as she could about Down syndrome and the services available for her child.

"Craig was less than 6 months old when he began early intervention services and stayed in the program until he was 3," she says.

Craig received those services at the Kennedy-Donovan Center in New Bedford. According to Tammy Wunschel, program director of the center's Early Intervention Program, one important reason for early intervention is that children with Down syndrome tend to have low muscle tone or mass.

"The earlier you can begin to work with them, the stronger their muscles will become and the more apt they will be to accomplish their developmental milestones," she says.

Another critical factor, she says, is that "for any child, brain development in the first three years proceeds at a remarkable pace. When a child's brain is stimulated, it contributes greatly to increased cognitive ability."

She adds, "A Down syndrome child may not hit his/her milestones within the same age range as other children. The expectation for most of these children is that they will reach their milestones. They will just do it later."

That's how it happened for Craig Kinney, who is now 23 and has two sisters.

"Craig has done all the things other children have done, but he was developmentally delayed, so he did them a little later," says his mom, program director for Family Connections, a support service of the Nemasket Group in Fairhaven. The nonprofit agency works with individuals and families with developmental disabilities.

"Speech has always been the most difficult part of Craig's syndrome, but he has learned to communicate," Sandy Kinney says. "He signs. He gestures. He uses facial expressions and communication devices."

Speech and language development can be especially challenging for children with Down syndrome, says Wunschel. "Early intervention teaches them sign language, which helps decrease their frustration and allows them a way to communicate with others."

When Suzette Vermilya, 45, of Wareham learned that her son Shane, now 3, had Down syndrome she says, "I had lost one child and Shane was alive, so I was surprised (by his condition), but I wasn't devastated or crushed. However, I have three other children and the financial and emotional needs of Shane were a real unknown. Both my husband and I worried greatly about that."

"While I was in the hospital one of the nurses who had a son with Down syndrome came into my room to talk to me," Vermilya adds. "She encouraged me and told me that eventually we would all be OK. That conversation inspired me."

Shane began early intervention services at 4 months.

"Shane has his challenges," says Vermilya. "He has sensory issues and doesn't like anything with texture. For instance, he eats Stage 2 baby food and resists playing with Play-Doh or sand."

And, just like Craig, Shane does not speak very much.

"He does know sign language and can approximate words so that we understand his needs," Vermilya says.

Kathleen M. Healey, program director of the Day Habilitation Program for Adults at the Kennedy-Donovan Center, says people with Down syndrome have a wide range of abilities. "Some do not function in the developmentally delayed category," she says. "It all depends on the specific type of Down syndrome and other factors, such as genetics, which might affect their learning ability."

As children with Down syndrome grow into adults, various options are open to them.

Healey says that "some people with Down syndrome continue to live with their families as adults. Others may live in a variety of adult arrangements, which can include group homes or supervised apartments and, in some cases, they live on their own."

She adds that "when a Down syndrome child is young, it's hard to determine their future capabilities, so we suggest that everyone who works with that child have high expectations for their future abilities. The sooner a child and their family are involved in an early intervention program the better."

Wunschel agrees.

"The primary caregivers or parents are the children's best teachers," she says. "It is important to educate them so that they can incorporate therapeutic techniques into the child's daily routine at home."

Early intervention services will usually include a developmental therapist who works on cognitive and general development, a speech therapist who works on the child's communication skills and an occupational or physical therapist to work on motor skills and sensory integration.

At age 3, the choice for Down syndrome children's parents is whether to choose inclusion in public school, which would also include appropriate support services, or to attend a private school.

Not all Down syndrome children are medically healthy, however. That makes a difference in their placement.

"I believe in inclusion for children when it's appropriate," says Healey. "That depends on the level of disability. Some children may have medical or behavioral challenges that would require placement in a special school which would meet their more complex needs."

The Kinney and Vermilya families have chosen full inclusion in public school for their sons.

"I would hope that everyone will see Shane as Shane. He's a little boy who just happens to have Down syndrome. I don't want Down syndrome to define him," says Vermilya.

Craig Kinney is now a young adult and is as defined by his many accomplishments as he is by having Down syndrome, his mother says.

"Craig was in inclusion classes all the way through his high school years. We now think that he will be able to live in his own house or apartment with a support system. He has worked at various jobs in the area and continues to do that. He does date and might, at some point, even marry. He is happy and leads a productive life."